What’s in a Name?

In the second half of the 19th century, a new epidemic spread across the country: Women of the upper and middle classes were taking to their beds with fatigue and weakness. It was neurologist George Miller Beard who gave this condition a name: neurasthenia. He blamed the malady on the modern predicament of “American nervousness.” (See The Myth of “It’s All in Your Head”.)

Despite a rash of outbreaks reported around the world beginning in the 1930s, it wasn’t until a 1955 outbreak in London that this mystery disease was given a more scientific diagnosis: myalgic encephalomyelitis (ME), which means inflammation of the brain.

But the Centers for Disease Control and Prevention (CDC) reversed all that in 1984 after yet another outbreak in Lake Tahoe, Nev., when they dubbed the condition chronic fatigue syndrome (CFS).

“When we gave medical interns the name ‘chronic fatigue syndrome’ with a prototypical person with this illness versus a medical sounding term (myalgic encephalopathy), we found there was judgment when they saw ‘chronic fatigue’ because it seemed psychological. If you called something chronic cough syndrome, they’d say, ‘So what? Everyone coughs.’ But if you called it bronchitis or emphysema, then people would say, ‘This is important,’” says DePaul Psychology Professor Leonard Jason, who is a leading authority on CFS/ME.

That’s why so many patients prefer the term myalgic encephalomyelitis. “It’s a brain infection,” says Marcie Zinn, a psychologist who conducted
CFS/ME research at the DePaul Center for Community Research. “So many people still think the disease is in your head, so the diagnosis really needs to be more clinical; otherwise people with the disease are left fighting two battles: the disease itself and public perception.”